Kerala extends free Risdiplam to SMA patients up to 25 years

Thiruvananthapuram, Feb 28 (PTI) The Kerala Health Department has extended free supply of Risdiplam to Spinal Muscular Atrophy patients up to 25 years of age.

State Health Minister Veena George on Saturday said the benefit, which was earlier limited to patients up to 12 years of age, has been expanded to cover those up to 25 years under the state’s rare disease care initiative.

The decision has been taken as part of the comprehensive rare disease treatment programme ‘CARE’, launched by the state government in 2024, according to a statement.

All patients diagnosed with SMA type 2 through genetic testing will be eligible under the expanded coverage, it said.

The minister said the move was taken after considering long-standing demands raised by patients and their associations.

An amount of Rs 30 crore was earmarked in the last state Budget for the purpose.

With the expansion, around 80 per cent of SMA patients identified in Kerala are expected to receive the medicine free of cost, she said.

Treatments for rare diseases are highly expensive and require long-term support.

The CARE programme was formulated to address these challenges and has been providing free treatment and continued assistance to several children, the minister said.

The latest decision is expected to improve the quality of life and enhance the self-reliance of young patients by bringing them within the treatment ambit, she added.

Distribution of the medicine will be based on genetic testing and the recommendations of an expert committee.

Reiterating the state’s commitment that life-saving treatment should not be linked to financial capacity, the minister said Kerala had become the first state in India in 2022 to ensure free treatment and supply of medicines for SMA patients.

Spinal Muscular Atrophy is a genetic neurodegenerative disorder characterised by the loss of motor neurons in the spinal cord, leading to progressive muscle weakness and atrophy and, in severe, untreated cases, death in infants. PTI LGK SSK